Support for anyone with a parent with dementia - drop in for support, a rant, or a cry. All welcome.

[CMOTDibbler]

Welcome to the thread no one wants to be on, but we are all travelling with our loved ones along their journey with dementia.

I took him a lucozade sport today . He liked that .

I said here you are Dad , a nice glass of red !

I'll take another icecream tomorrow

Hi all.

I am at the very early stages of dealing with this as my mother is becoming increasingly forgetful, panicky and anxious in daily life as well as clearly having forgotten lots of stuff that's happened in her life; things she has told as family stories for decades seem to be slowly vanishing from her brain. She's forgetting things she knows like the back of her hand (how to make brandy cream, how to cook a plain tomato pasta sauce, what a pinafore is, all kinds of stuff). This Christmas was an eye-opener for me and my siblings as to how far she has deteriorated. My dad is around and completely compos mentis, though slowing down a bit as he gets older (he's 72 and my mum is 69). I don't know what to do or how to handle it. My dad feels he can cope, though he is obviously under increasing pressure as my mum gets odder. She's always been quite abrasive and difficult as a person so this makes it harder for all of us as she will absolutely not accept any idea that perhaps there is a problem. She's kind of OK in her own environment, as long as nothing unexpected happens.

Added to this, when I visited them over Christmas, it became clear that my mum is now becoming quite a dangerous and risk-taking driver. And while I don't actually care if she kills herself that much (we have a really quite fraught relationship and are not particularly fond of one another), I really don't want her to kill anyone else in the process. She won't entertain any idea that she is not a safe driver.

My oldest brother and I were thinking of contacting her doctor to explain the situation and how difficult it is for my dad. I'm also trying to minimise the impact on my youngest sibling who is only 24. The rest of us don't still need our mother so much.

Not really sure what I'm asking or what you can tell me that might help but, well, here I am. It sounds like many of you are further along the road than I am so I will be interested to read all your stories and hopefully learn something from them.

I have no idea how to stop her driving. She lives in a place where driving is more or less essential so not driving would completely isolate her. I'd like them to move nearer me but think it is unlikely they'd want to.

Trying to speak to the GP is a good idea. There is scope for medication (Aricept) which could delay progression of memory loss. This might pursuade her to go. The process seems to vary but he might do a mini mental state test or similar and if there is cause for concern, refer her to a Memory Clinic for further tests. One of the first questions they ask is about driving. I assume they are able to get licenses cancelled.

Yesterday was horrific.

Despite mum being so sprightly the day before, and me worrying my brother would think me a drama queen, mum was very poorly yesterday and barely registered he was there.

She could not speak, just groaned, and she looked frightened. I asked the nurse to start mouth care as, well I won't go into detail, but it's not pleasant. They attempted to give mum some of the drugs to stop the secretions and some pain relief but she pushed them away and they cannot force her. So she has had nothing.

I half wondered if she had had a mini stroke in the night, as she seemed to have lost her ability to communicate.

I am again, questioning whether she would be better in hospital although moving mum now would be traumatic and wrong, I know. She needs palliative care and they seem incapable of providing it. It is this culture of fear of being accused of anything untoward that paralyses them into doing nothing. I fear today.

So sorry to hear that Downtown. You could ask her GP to consider prescribing morphine patches that would give her pain relief and dry up secretions without her having to swallow anything. My mum has them, and they are just stuck on her back (so she can't fiddle) and stay for 72 hours

Oh. Mum does have patches- not morphine I don't think.

This really is a horrible way to die. I'm going over there now so I will see what can be done. I don't want her suffering like this.

Wishing you strength today Downton. Hyoscine (for secretion dry up) comes as a patch too, so she shouldn't be suffering at all.

Thanks. Will mention that.

No one would let an animal suffer like this. I wonder why it is so in humans.

Thinking of you. Sad to say, but I hope it will soon be over.

Thinking of you and your Mum DowntonTrout

I would like to join you, if I may. So sorry to hear Downtons news. I have read all the posts and it's such a distressing and emotionally draining time. Glad to find this thread I feel it helps to talk to people in the same position.
My mum is 83 and in a care home. She is middle stage dementia. It has been a hellish year getting to this point as she was in denial and suffering with delusions and awful hallucinations whilst still in her home. With the help of the GP and community mental health team I finally got her to start medication which helped her temper and hallucinations but after a fall and trying a care package she was no longer able to care for herself.
When I see her she tells me she hates it and want to leave to get her own house over and over again.The MH team and CH tell me to go along with it and try and distract her as her short term memory is terrible. She does remember some things we talk about on previous visits tho. It's such a difficult illness to cope with. I take her to the shops for half an hour sometimes as she can walk a short way, which she enjoys, but never wants to go back. The CH said we could have her to us for xmas and she enjoyed the visit until it was time to go back when she got really upset and refused to go it was very upsetting for us and the kids and I felt so guilty. She asks to come live with us but we don't have room and I don't think I could meet her care needs.
I saw her this morning and she told me she is a nothing with nothing to offer anyone as she has nobody to look after. The CH is a good one and the staff are really nice but alot of the other residents are later stage and she finds it hard to deal with that.
Sorry for the long post, just needed to get it all out.

Hi Wyrd, welcome. If your mum brings up not being able to offer anyone anything again, it might be an idea to look at things she might be able to make for charity - if she could knit or crochet even a plain square you could supply her with wool and send them off for Woolly hugs, or if you tacked pieces together she might be able to sew squares of fabric together to make a woolly hug quilt. Nothing fancy, but it would pass the time, and maybe make her feel that she does have something to offer.

thanks thats worth a try it may help to distract her a bit as shes not up to reading.

Please don't feel guilty. You are doing your best for your mum and caring for someone in the mid to late stages is incredibly difficult. It took mum months to settle into her residential home and, in truth, she was never really happy there. I also found taking her home hard as the going back was distressing and by then she could not remember that she had been out anyway.

We are taking it in shifts today. The GP has been out to her again. The staff said they all came down to see her in the night as they all wanted to say goodbye. Mum has also started with a pressure sore which is not good news. I don't know how she is holding on. They are talking about fitting the syringe driver and the palliative care team are on call for us 24 hours over the weekend.

Fortunatly, my mum still enjoys 'reading' though she doesn't understand any of it. But knitting seems to endlessly occupy her as though the patterns defeat her she knits squares for someone and if they go wrong they just get unravelled and start again.

Before she couldn't manage a pattern, she used to knit hats for the Oxfam shop as they apparently sold well and they gave her donated wool to do them.

Did your mum seem more comfortable today Downton? Can they bring in a flow mattress to head off the pressure sore?

Thank you Downton for taking the time to answer when things are so hard for you. I can't imagine what you are going thru.

CMOT thats good that she does it mum used to knit as well and crochet altho that's more fiddly I will try a few things as she says theres nothing to do at the CH. I did suggest a radio in her room but she doesn't want to be alone despite not wanting to be with the other residents.

I'm very sorry to hear this Downton, thinking of you all.

Hi Wyrd and welcome. My Mother is in the moderate stage too and also finds it difficult seeing those around her who are more advanced. She doesn't know she has to stay where she is yet SS the SW said she would review the situation in 3 months. I don't think she will every truly accept she has to stay. Diversion kind of works with her but not always. None of this is easy.

it certainly isnt. mum asks why shes there and said the other day what has become of me why am i like this. it leaves me numb sometimes its so sad. mums the same she will be distracted for a bit then start to talk about how bad it is. the CPN said to tell her its the best we can do at the moment.

That's what I say pretty much along with the SW says she has to stay there. She keeps sayng she wants to buy a flat in a gated community or something which I try hard not to respond to.

Downton - so sorry your Mum's birthday was not a good day. My Mum has morphine patches for pain relief. She was fairly with it today for her birthday. She had a tiny lick of the cream on the cake they made her. But I also noticed she is dribbling more and the cream dribbled out. I drove home feeling more contented than I have done for ages and actually thought if Mum could slip away tonight in her sleep that would be perfect.

wyrd - it is difficult hearing our mums say they don't like being in a home. Mind you I know I would be the same. I dread ending my days like that. A little bit of knitting would help her to feel useful.

pudcat- that's a good point isn't it no one wants to be in a CH however kind the staff are that's what makes it so hard, being unable to make it better. I need to try and accept I have to make the best of a bad situation for mum.

We have just left mum. Me, my brother and my daughter. A dear friend is staying overnight with her so that we can try and get some sleep. Mum keeps asking " what am I doing.?" Like its on a loop in her brain. We think she means what is happening to me? But she does not understand anything we say. It is almost unintelligible, her voice is strange, due to the dehydration we think. No fluid today. She now has the morphine patches and the syringe driver is ready should they need it. I don't think she knows who we are, or anything anymore. I am going to try to sleep. I hope the call doesn't come and yet I wish it would.

Thinking of you Downton.

Help please. Dad deteriorating rapidly. Not retaining or understanding anything. Sister coming up from london this week. She has power of attorney. Does this mean that the gp will speak to her about dad? He won't speak to me other than to say he cant discuss it.
He is not safe or capable to manage on his own any more. He doesn't get any help other than from family and friends. Local authority social work came out a month or two ago- a very abrasive woman who said he seemed to be managing fine.